I can hardly read my last note without wanting to kick myself….. I guess that is why you are told never to put all your eggs into one basket…..because Cancer will come and rip that precious basket from your tightly clenched fist and there is not one thing you can do about it.
Since we have got back from St. Judes there have been a whirlwind of appointments all in order to prepare Matthew for his bone marrow transplant. It had been very chaotic and that Thursday they added an unexpected lab appointment….Oh well I thought at least we were out patient and got to return home every night….but this appointment was unexpected and left me with no choice but to take the 2 babies to the hospital by myself….I rarely do that in fact that was the first time. They were perfect the whole drive up as we sang songs and listened to the radio. When we arrived to Stanford I complimented myself on my awesome ability to carry Lily in the baby carrier, push Matthew in the stroller, and lug all of our stuff for the day….I got this I thought…. our child life specialist Michelle met us at clinic to help with Lily while Matthew had his appointments. I have known Michelle for a long time now and have always enjoyed our time together….. When you spend as much time as we do at a hospital you cannot help but form relationships with the medical staff, nurses, and doctors. We joked and laughed and passed the babies back in forth through the appointments. They informed me Dr.Luna wanted to see me….I remember this annoyed me, this was supposed to be a short appointment….at this point the whole novelty of having the two babies by myself had long worn off and I was ready to get them back to the confinements of their car seats. When Dr. Luna, Dr. Abrams, and my social worker Kate walked in the room, immediately in a joking manner I said….and I repeat I was joking… “Last time I saw all three of you together it was bad news”….the silence was deafening and the look on their faces told me I was the only one joking. My heart dropped…I mustered out “What?!?”….they informed me that Matthew’s most recent MRD came back at 30% leukemia blasts….transplant had been put off since Matthew still had far too much leukemia in his body for any transplant to be successful. They said Matthew has seen every chemo available to them… his cancer, it’s just really bad…they then reminded me of all the horrible facts about Matthew’s cancer…Hopelessly they said the statistics just aren’t in our favor, they never were…. They talked about possibly more chemo but they weren’t sure what to use or if it would work….the toxicity would be bad they said…or we could consider our quality of life option….send you home on a low dose chemo, manage his pain and see how long we might get….I felt flushed…My mind could not understand what they were telling me…..I became a crazy cancer mom…crying and blurting out treatment options they should try…I couldn’t believe it…how could this be….I looked at him…he smiled… his sweetness filled the small room….He has no idea…. each moment is like the next… he is completely oblivious to the fact that we were just informed that he is losing his life to cancer…I grabbed him and held him as tight as I could afraid to let him go…. he squirmed away from me…just like his life is…squirming away from me…Hopelessness and despair filled my being….please not yet I begged God…St. Jude will take him regardless of his MRD I said defiantly….The doctors said they would call St. Jude, UCLA, UCSF…Boston…everywhere and try and find something….I looked at them searching their faces for some sort of hope….it wasn’t there…it was all gone…I could only find sadness and defeat…. We love him too they told me, we love your whole family… him not responding to treatment is just very bad …My head was spinning and the room was eerily quiet. All I could think of was how I needed to leave…. I wanted to call Ron and tell him how our world was falling apart…again….and this time we might not be able to save it….. They were preparing the paper work for me to do just that when Matthew suddenly stopped playing. He ran to me and when I picked him up he shivered….Since Matthew has been diagnosed with cancer he has had 3 blood infections all stemming from a line coming into contact with a dirty diaper…. Mysteriously his diaper had come off 2 days before and had left quite the mess including a dirty line, so when he shivered I knew that something was wrong and it was probably a blood infection. I ached to leave… I wanted to grab my babies and just run away from this place. …So badly I just wanted to be alone so I could think…process what they just said…the part about my son dying….and the other part… about giving up and taking him home to die….but I can’t cure blood infections just like I can’t cure Matthew from cancer ….I looked at Michelle and Kate, something is wrong with him I said…I remember the doctors came rushing back into the room…one reported not liking the way his skin responded when she pushed on it….. at this point I could barely hear them and could care less about what she thought his skin looked like….they all seemed to be going about their business…cancer as usual…. I however was not feeling so normal… I wanted to fall apart….I wanted to throw myself on the ground and scream and cry at the sheer agony of it all…instead very calmly another cancer mom words rang in my ear….. her daughter was in the process of dying and during this time she had posted in our infant leukemia support group something to the extent that we should cherish every moment with our cancer kids…whether they are sick and having bad days to having to spend extreme amounts of time in the hospital… because she said, you never know if that very moment may be your last….. I had thought of those words many times since she said them….using them as tools when times were tough….so I reached for them now as Matthew’s blood infection began to inflict havoc on his little body…He was crying for me to hold him as they began to work on him…I got up on the bed and laid down with him….he was shaking more now that the infection was getting worse…I held him tight as he shook and shivered to sleep….I used my hat to cover our faces as I cried….I felt so tired….the weight of the world seemed upon us….I called Ron….I have no idea what I said to him…I just remember him saying “What babe? Just tell me what’s happened?” …This is when I start to notice that something might be wrong with me…I lay back down with Matthew…he wraps his little hand around my neck and squeezes tight….Oh how I love him and I let this feeling invade me…I allow my brain to only think of how wonderful he feels…my sweet boy.....he is starting to fever but still he sleeps peacefully… his little bald head is so soft….he needs me right now….and I like that…I need him too…..I love how it feels to be so needed by him…everything about him I love…he is so perfect for me….Dr. Abrams whispers in my ear that she called Ron again….She said she just wanted him to drive carefully and to let him know Lily is fine and that me and Matthew are also okay all cuddled up on the bed. She tells me they are sending us up to the PICU, just to be extra careful….I cried harder at that….One of the nurses says “It’s okay honey, it’s just an infection we will take good care of him up there”….for some reason I felt the need to explain my theatrics….It’s not that I tell her, he’s not responding to treatment, he’s dying from his leukemia…I didn’t wait for her reaction, I just laid my head back down….They didn’t talk to me too much more after that…..what could you say to comfort a mother who is told her child is going to die….Nothing…there are no words…there is no action…there is nothing a person can do……So they didn’t…instead they focused on Matthew…I heard them bustling about us, giving orders and making assessments…Ron arrived and immediately we hugged each other and cried right there in the middle of the PICU for the whole world to see….we didn’t care…I told Ron I wasn’t feeling good and that I needed to go to the car…..collect myself…gather some strength…just be alone for five seconds…On my way out I see Noa and Izahia with Michelle…Noa squeals my name in delight and Izhaia looks at me….his eyes searching mine to see if everything is okay….I look away trying to shield them from my tears…I’ll be right back guys…I hurry to the elevator….Lily is hanging off me and I feel like I am about to throw up…I get to the car and put Lily in her seat…I collapse in the front and sob…I sob hysterically and wither and thrash about…air seems sparse…. the full body pain that I feel now has me in a fetal position…Is this a panic attack I think…I start to panic more at the thought of it…I have never experienced these feelings before…So hopeless…such despair….My soul hurts…..I had no other recourse but to pray to the creator and keeper of my soul……A Christian song came to mind “You are the air I breathe, Your holy Presence in me”…God comforted me with the thought that he is all I need, My heart calmed…I took a deep breath….I prayed to God to renew my strength…to give me the words to comfort Izahia and Noa….I didn’t feel normal right away but I felt better and I didn’t feel like throwing up anymore… I scooped up Lily and headed back to the warzone…Matthew’s blood infection symptoms disappeared with the first doses of antibiotics….The heaviness in the room seemed excessive for a boy who did not look sick st all…. My sister Liz came up that night to stay with Matthew so Ron and I could talk about what we were going to do….As we made our way out of the hospital I looked at my party of 5 that should be a party of 6….I couldn’t help but think that this how it will feel like when he’s gone…Even though my arms were filled with Lily they had never felt so empty…I felt like I was leaving him behind…in our minds Ron and I had lost hope and even though he was still here it was like he wasn’t…..Ron and I knew it would be a long night and it proved us right….Morning brought no relief as Matthews illness was still there waiting for us to face it…Deciding to continue to fight seems like a no brainer but it’s not….Our options now can only be extreme and very aggressive…anything we do to him can also take his life…Coming home from Memphis was extra special for him since he had not been home since January….We loved watching him discover all his toys again…play with the dog and cat…stomp and play with such ferocity….He was home…where he belonged and he had missed home….The actuality of Matthew never returning home is more real that it has ever been….The doctors were giving us an option to end out his days peacefully at home…with the family whom adores him….that idea sounded very easy, fluffy, and nice in comparison to our other options ....but it didn’t feel right and I would at least expect that if and when his time comes, that Ron and I would feel right about a decision like that….While I showered that morning I prayed and cried for God to help me…..God showed me that much of my reason for not wanting to continue to fight was fear…Fear of him dying…fear of him suffering…fear of him not coming home…fear of not knowing…I had to face those fears….If he dies, I have loved him with all my heart and soul….I would never trade any moments we shared…and the saying holds true that I would have rather have known love than to have never known it at all….and if anything knowing, loving, and mothering this child has been one of the greatest honors God has bestowed upon me…Fighting cancer requires much pain and suffering…Matthew will have to endure so much more pain and suffering in order to have a chance at life…I can never predict how much he will have to suffer and what the long term effects will be….but I know that he laughs and smiles all day long…even while on chemo or having crazy things done to him…he cries and is most sad when he is without his family….sometimes we suffer to preserve the things we love…. I went to Ron and said we can’t give up….If we have only 1 chance we will take it….What about Lily? I told him she’s a perfect match…God didn’t have to give us that…He knew it too…but for Ron this decision is harder…Last December we buried his mother…she suffered in a hospital room until she died…It was very sad and is still very fresh in his mind…We discussed it further and also realized that giving up now is also giving up on finding a cure…More than anything we want a cure for infants leukemia or at the very least better treatment.
So now we were committed to continue fighting but Ron and I felt very defeated….it was like we had already lost the big game….One morning I told my mom how I felt like such a loser…the words shocked her and she said how can you even correlate losing to such a hard fight….because the loss it’s just so great I told her….here I haven’t even “lost” him yet but just the mere thought of it had turned our lives upside down….Ron and I admitted to each other that we were tired….not sleepy tired but tired from fighting cancer…emotionally and physically exhausted from the last 19 months…With that came a lot of guilt but it felt good to say “I’m tired”….The next few days were just as tough as we struggled to be positive and strong…We had many meetings and encounters with the doctors … all with bad news…At one meeting the transplant doctor told me we had 0% chance at survival… she pretty much said that St. Jude’s treatment course was not only cruel but a horrible idea…. she seemed so sure of herself quoting trials and studies….almost God like as she predicted our future…I however had a late night study session myself and happened across a couple of studies as well…I pointed out some flaws in her treatment plan… I asked her some questions…she didn’t know the answer…funny I thought God knows everything….Only he can tell me my chances are zero and that is where I can find hope…I looked at her and said I understand what you are telling me about the studies and science of it all but I have to also look at what is tangible and a goal I can reach…something that gives me hope…I went on to tell her about Phoebe a little girl at St. Jude who has the same exact type of leukemia as Matthew…Phoebe’s mom was also told Phoebe had zero chance of survival but Phoebe is going home and from my definition her quality of life is optimal…the transplant doctor said she understood and I’m glad she did… I walked out of that meeting different…My hope had been restored and I also knew that we would not be having transplant at Stanford. That too broke my heart. This whole time I had this whole thing planned out. I have a great support system here at Stanford and I was going through a bad break up with leaving that plan behind.
So where are we now…Matthews exact treatment course is unclear and is very much dependent on a bone marrow test that will be taken 5/14. Regardless of his bone marrow result we will be heading back to St. Jude’s for a very long haul. The two hospitals are trying to give us as much time together as possible but my 5/20 departure date already got shortened to 5/17 so who knows. I do know that right now he has 4 leukemia blasts in his blood that are visible to the naked eye under a microscope. We are watching those numbers as well as a few others as indicators that the leukemia has taken off. His new chemo seems to be working as far as keeping the few blasts in check. Right now we still get to spend our nights at home so we are happy and enjoying every minute. We are living differently right now because there certain facts that we know are about to happen. One is that Matthew is going to be very sick. Sicker than we have ever made him. The second is that our family will have to be separated for a very long time. How long is unsure but at the least 4-5 months. Finally and most significantly Matthew may never come home again. All of these facts make us quick to laugh, eager to hug and just plain happy to be together.
Saving Grace 1/22/2012
This battle is really going to go blow for blow…..all we can do is hope and pray that Matthew and the doctors will be stronger and smarter than the Cancer. These past few weeks have been really tough….I have learned a lot about Matthew’s disease. Obsessively I absorb and process as much as I can….My mind never stops…..You see Cancer is so very complicated and smart….It is like it’s very own evil entity….It’s goal to rob, destroy, and obliterate everything it can….I can’t help but to marvel at Matthew’s particular type of cancer…. it’s ability to perfectly infiltrate his body….It starts by blocking fixer cells designed to fix glitches in the DNA strands…..secretly it multiplies disguising itself as healthy normal cells…slowly at first…then at a rapid and frantic pace the cancer intrudes, until all the good cells are gone and only cancerous cells are left….so you fight back, bathing the bad cell in poison….poison designed to kill it ….and at first it does kill the bad cells but somewhere super cancer cells survive…they hide and mutate… learning how to live and thrive in its toxic environment….Cancer is ugly and disgusting…and I hate it with all my might.
Speaking of Gods plan we found out today that our little Lily Grace will be our Saving Grace. She has been found to be a match…. I am excited with the possibilities of it all…I have not felt this amount of hope for our future than I do right now…..When I found out about Lily I could not help but to think about when we first found out I was pregnant with her…The news devastated me I could not understand God’s plan in it all….I thought back to a moment when I still wasn’t sure if I was pregnant, but had been feeling nauseated…I was having one of the many negotiations I have with God…Explaining to him how he was putting me in a really bad position….”I might make the wrong decision” I threatened…”Matthew is so sick, I can’t do this” I cried…and then the most peaceful feeling overcame me and into my heart he put the words “But I can”…. Of course he can, and with him so can I….It was then that I knew I was pregnant with Lily, I didn’t need a test to tell me and still would not take one for another month or so….We hid the pregnancy for 6 months because we just could not wrap our heads around the idea of another baby….God had a plan then, he has a plan now…I am so thankful for his steadfast promises….I believe in him more now than I ever have…
January 3, 2012 was Izahia’s 13th birthday and a normal routine doctor visit with Matthew’s oncology team at LPCH…. mainly my focus that day was my older sons impending manhood….. The morning before I left, Izahia and I had made plans to take him shopping for some video games he had been eyeing. We talked about what we would serve at dinner and how special it was to become a young man…I kept asking him if he felt different?..... I remember feeling proud of Izahia and the person that he is becoming…It was starting off as a good morning…I was happy and satisfied….I was hopeful for our new year….I remember telling myself “This is our year, this year things will be different”…..everything seemed to be right in my world. As we were preparing to leave for Stanford Matthew slipped on some stairs and had fallen pretty hard…..The bruise was huge and looked awful right away…Damit I thought, as I hoped his platelets would be high enough for that not to cause any eternal bleeding….We’re fine I reassured myself, your paranoid because of what he’s been through….Still I am always thankful for our Stanford visits….I found them to be comforting…A reminder of what we had been through but also of what we had overcome…..but most of all I look forward to getting the clean bill of health from his doctors…..When Matthew’s primary care physician saw Matthew’s ugly bruise she thought she should have her attending look at it just in case we should get a CT scan….A CT scan I thought, Geez it was just 2 stairs…but I would rather be safe than sorry…Dr. Abrams also said “hopefully labs will be back so he can get his chemo and we can send our little prince on his way.” Oh good I thought because at this point Matthew was becoming quite bored of the whole ordeal, Noa was starting to get restless, and my sister whom had Lily strapped to her in a baby carrier was rocking around trying to soothe Lil’s back to sleep. When Dr.Abrams came back she had the attending Dr. Luna and my social worker Kate in tow….I remember thinking that’s odd Kate’s visit are always more of a social one she never comes in with the doctor’s….Dr. Abrams asked Liz to step out with Lily and Noa….some excuse about the room being crowded…..At this point my gut and instincts were sending off major signals that something was wrong…I always have an entourage with me and they have always been a merry welcome that’s what happens when you have lots of kids…you need lots of help. The next few moments seemed to play out in slow motion…The three sit down looking at Matthew and I with these looks on their faces…I can’t describe them but it was a look that made you want to scream “WHAT?” and I almost did until I heard Dr.Abrams voice…. she spoke those god awful words…..His labs came back we see leukemia blasts…..I thought I was going to scream but I didn’t…instead I clung to Matthew and sobbed….Matthew grabbed my face to look at his…he put his little finger to his lips and shushed me…something we do to our dog Chewie all the time because she barks a lot……. Dear God I thought why can’t you just let me fight this in his place…And then I looked up at them and said…Okay now what?....Dr.Luna continued to tell me how bad it is that it came back…how aggressive his leukemia is….his labs were showing 60% to be leukemia blasts….how hard obtaining remission is after relapse…only a 50% chance…how sick he is…how strong his cancer had become…we have to start over…. induction phase begins tomorrow…He was considered an emergency relapse….chemo would have to be stronger…we would need to get radiation…. bone marrow transplant (BMT) is our only hope….our only hope…It was hard to breathe and I kept getting waves of nausea….Then I got angry…Why I ask them did we not do a BMT in the first place…all that he went through has been in vain…I was starting to freak out…..Dr.Luna quickly stopped me and sternly said “It was not in vain” ….then we all looked at Matthew…of course not… I started crying again and with the utmost desperation I said “I just want him to live…He cannot die”…I could not believe I was begging for my son’s life. I wanted to get angry with God and shake my fists at the unfairness of it all…But I know better… when you frequent places like LPCH you see how unfair life can get…and we are right… life is unfair….all a consequence of living in a fallen world…Cancer, disease, sorrow, death it is all a part of that…because I believe in God ….am I to be spared tragedy…No…. even Jesus Christ himself was not spared…. We are left with no solutions but to move forward…to keep fighting….to hold on tighter….The doctors said they were not sure what they were going to do but to go home for the night…go celebrate Izahia’s birthday Dr. Luna said…okay sure I thought, sounds like a grand time…..We were to report back to them first thing in the morning to check into the hospital until further notice….and there you have it….. hell in a hand basket.
That morning I sadly packed our stuff…I kept having moments were I could not contain the emotional pain I was in…A loud sob would escape, startling even me… Ron asked if I was okay…Yes I said ….but thought…No I’m not okay…..Fear had found its way, I was finding myself unable to focus in those early morning hours…Please God I prayed help me through this…help my family through this…..but most of all just heal him.
We checked in Wednesday, by this time Matthew is covered in bruises… a sign that the cancer was really there…This was not a mistake….He had a bone marrow sample taken and several tests to make sure his organs were still functioning properly and he would be able to handle his new chemo regimen. We would have to check back into the Ronald McDonald House while he would be hospitalized. We can have Lily in the room during the day but only the caregivers can stay the night. Ron got us checked into the Ronald McDonald House while I hung out waiting for Matthew’s room to get ready at the hospital. By the time we left clinic he was spiking a fever and was clearly not feeling well. Ron and I were having a real hard time keeping it together…we struggled through each interaction…on the verge of an emotional breakdown….I felt so defeated…some of the nurses avoided eye contact…others offered words of encouragement, reminding us of what a little fighter he is…another said he was an odd beater…..One said “He beat it once, he’ll beat it again”….If we beat something…which means you won….then why do I feel like we lost…it’s because we were never winning…only buying time. Matthew when first diagnosed, was 2 months old…radiation on a 2 month old is very bad. Studies have shown that at 18 months the organs and brain are best able to handle such heavy doses of radiation. Matthew will be 18 months this month….We were told that to not give him radiation would be a disservice to him and the transplant… I am so sad that this is what it’s come to, and even still after transplant Matthew’s odds are stacked against him….
Regardless of the odds and percentages….. I am more determined than ever…This time we can do it different…we can be better… I spent so much time worrying and being upset that I couldn’t enjoy my life….and this is my life…..Matthew fights so hard every day that he deserves to wake up to a Mom who is happy and smiling…I need to be that mother regardless of how hard it is…I will savor each moment with him like it’s my last…How I should have been living in the first place….Ron and I are committed to make him as happy as possible during this time…I am also demanding that the higher up doctors start thinking outside the box…I don’t care if they have never treated his type of leukemia…you better start finding out how…I even started tossing St.Jude around to them….Dr.Luna accussed me of wanting to leave…..No I told her I want to save my sons life….this may be a learning process for them but it is my child…..a parents most precious commodity….I know that most of our treatment protocol comes from St. Judes anyways…..and we will do whatever it takes….After that conversation Dr. Luna called the head of oncology at St. Jude as well as at UCSF….She assured me that she will keep in close contact with them through this process…However as much as I love this hospital and do admire the doctors, nurses, and other staff…..if they don’t get it under control with their plan A we won’t make it to plan B….This is their last chance….I will travel the world and back to help my son….We do have a huge battle ahead of us…bigger than before…but together we will face it…This time Ron and I will have to take all the help that is offered to us….If that means coordinating people to help run the store so he can be here or having people help with Izahia and Noa…then we will take it….Last time we tried to tough it out do a lot ourselves or with only a small group of people….it was so hard on all involved…I look back at that time and it was like we barely survived….We have no choice but to do things differently…..Another horrible statistic is that many families divorce and go bankrupt when their children are diagnosed with terminal diseases….We are not just fighting for Matthew but for our whole family….Matthew is also more aware….I went home the other night and when I talked to him on the phone he started crying….He missed me….Liz also showed him an old video of Carley the cat and him wrestling….He cried for that one too…..He knows where he belongs and longs for it as much as we do….At least I do not have to tell him what is at stake….Matthew lives every day as carefree as the last….He amazes me daily with his zest for life, strength and courage…He has been really sick with this new chemo sicker than he has been in a while….the other day right after a gnarly bout of throwing up he jumped right out of my arms and went to play his piano….I revealed out his ability to bounce right back…in the end he just wants to play, be happy, feel loved….all things we are capable of giving him…. Be prepared cancer we are bringing our “A” game (as Ron always says) J
Monday Ron, the kids, and I will be tested as possible donors…we have a 1 in 3 chance that one of us will be a match…Please keep us in your thoughts and prayers.
It has been a long time since I last updated…..So much has happened….. Matthew’s swollen lymph nodes ended up indicating a case of cellulitis. Cellulitis is caused by a type of bacteria entering the skin, usually by way of a cut, abrasion, or break in the skin. The bacteria is normally a form of Staph or Strep…..Normal people will develop a pus filled blister but Matthew’s nonexistent immune system could not form pus so it formed a gaping hole instead. Thankfully we caught it very early and he was administered antibiotics before they knew exactly what it was. I knew it was serious but I didn’t realize how bad it could have been until the head of the oncology department paid us a visit. He looked a little upset that Matthew had gotten cellulitis and immediately wanted to examine the area. He went on to explain how those type of infections can quickly spread to the blood stream and in rare cases cause the “Flesh Eating Disease” (Like having cancer isn’t bad enough)….He then went on to tell me that if anything at all is wrong or he has a slight fever I need to call right away….Up until that point I thought we were heading to safer ground….Matthew’s case of cellulitis was looking pretty bad for a few days….you could actually see the layers of skin….Right when I was about to run him into the ER with “Flesh Eating Disease” the hole started to get smaller and the area became less inflamed looking. Unfortunately for Matthew it was in a very painful spot (Near the groin area) and he was quite miserable for a few days….but the family jewels were spared from the “Flesh Eating Disease” and it healed up pretty nicely. Right before Christmas Matthew was admitted for another round of chemo. Of course the same day Matthew was having bone marrow sample taken, an intrathecal (Chemo administered into his spinal fluid), and would be admitted to the hospital to start chemo was also Noa’s first Christmas recital….I knew where I was needed most but I am also aware that I am missing a part of my other kids lives that I can’t get back and I can’t help but wonder how much will this disease take from us……even though it probably should not have bothered me…it just did…I felt sorry for myself all day. I’m sure another reason contributing to my sad state of mind was the fact that we were getting admitted….I always seem to be in a funky mood on those days. There is this one mother whom always tries to get me to join the parents group held at the hospital. I already imagine it to be something of 12 step meeting where I stand up in front of a group of people and say “Hi my name is Aimee and my son has cancer”…..I am sure there is a huge support system that I am missing out on…..but I am still coming to grips that I belong to the cancer club and don’t feel like hanging out in that type of environment as of yet.. However I find her to be a very interesting person who has many wise things to say. One day while we were talking about life with cancer, she tells me when her daughter got diagnosed it was an inconvenience for their family…..I was blown away by her definition of inconvenience….I thought to myself I find traffic and long lines an inconvenience…..Matthew’s diagnosis for us is better described as devastating…..She then went on to explain how her daughter has down syndrome and how children with down syndrome are more susceptible to cancer. I then wondered how much patience and grace came from having a disabled daughter….Perhaps I have been sheltered for too long from the tragedies that can happen in this world….I’m still crying at night cradling his sweet face…trying to absorb every detail of him. I still cry that he even has cancer and I am completely petrified of losing him. The thought becomes more unbearable with each passing day….because with each day my heart becomes more dependent on him…the more time I spend with him the more my love for him grows. Just the mere thought of life without him brings such gut wrenching pain. I wish I was more like her…calm, cool, and collected….The doctors would most definitely not use those words to describe me. I am more spastic, frantic, and obsessed with what will happen next. I keep asking the nurses crazy questions….like when they cannot cure the cancer then what happens. I was informed that it’s up to the parents to either have the child pass there, with hospice, or you can take them home and have hospice involved at home. Basically to keep them comfortable until the time has come. She said some parents cannot handle the dying process and just let hospice handle it. I know I could not let hospice handle it but I am not sure I would be able to handle it either. I have heard so many amazing stories of courage. One in particular was an 11 year old girl who fought a long hard battle but was losing. Her father was not able to cope with it very well. Towards the end she said “Daddy you have to let me go”. I do not know where these kids find the strength and will…but they are truly amazing. The person telling me the story said I will never forget her she made more of a difference and had more of an impact on people in her 11 years than I will ever have in my lifetime….. Cancer is so ugly and cruel. Another story that haunts me still was a girl I met as I was waiting to be discharged. She was strikingly pretty her hair neatly braided in perfect braids….her finger nails painted a festive green and red. As we were talking about cancer and the effects she blurted out “I am tired of fighting, I don’t want to fight anymore” there was an eerie quiet that swept over the room the idle chit chat was no longer. Her mother’s face contorted into an awful look of despair. This little girl was about 11 or 12 but had cancer since she was 2. This was the 3rd time out of remission…..her last period of remission lasted 2 years. What a slap in the face…2 years of remission. The mother next to me started to say every encouraging word she could think of but her words were not penetrating….the little girl looked defeated beaten down by a lifetime of cancer and chemo. I thought to myself what you will do if your child comes to you and says Mom I’m tired and I don’t want to fight anymore. Will I have the courage to let him go? When and who decides that suffering outweighs life? Right now I can confidently say that fighting for life is the right choice but say it’s 11 years from now and all he has ever know is cancer and chemo….I might feel different then.
Lately I have been feeling uneasy. I keep frantically searching the internet hoping to find other babies with his type of leukemia but I cannot find one. Isn’t that crazy not one in the whole world wide web. I know it’s a rare type but give me a break. I do find case studies where the babies did not make it…..I have not found one survivor. I recently asked the doctors about this and about his treatment. Since he is a part of a study his treatment protocol comes from this group that is conducting the study but it always comes right before we are about to start and the doctors always say they are not familiar with that protocol and need to study up on it. This makes me uneasy….Isn’t there other babies being treated with this protocol too. When I bombarded the doctor with all my questions and then ended with “We are not just shooting in the dark here…You guys do know what you are doing right?” He looked at me with sadness and said “I understand your frustration and I wish that I had the answers for you but all I can tell you is to take it one day at a time.” It is so hard to slow your life down to one day at a time…I want tomorrow, and the next day too…..but when I get ahead of myself or think into the future the uncertainty of it makes me worry. I also feel very sad and it’s crossing those bridges that are not in my path yet that are ruining my present moments with Matthew. So much is in Gods hands and so little is in ours that I have to let go….My son is happy and healthy today and that is all I am going to get right now…..It needs to be enough.
We had a great Christmas and NYE spent with family and friends. The only hitch was Noa catching a case of pneumonia 5 days before Christmas. When Ron called me with the news I was at the Ronald McDonald house. It was upsetting to not be able to comfort her or be with her and for a few days I felt depressed and upset that my children were so sick. I even thought maybe she has leukemia too since she has been sick almost all winter. Paranoid is another good word to describe me….Another major event was I was told by the doctors that they want me to stay at the Ronald McDonald house at least until March of 2011. This change of events has forced me to resign from my job. I was really bummed about that too. I happened to work at a great place with even greater people. Jobs like that are hard to come by and I will miss them all. Not only are we not bringing in the same income, but our expenses are up. I also was the one who had the insurance for our family and now that I have to resign we will have to be dependent on social services…..If they will approve us….Ron and I feel pretty vulnerable right now….This time has proven to be very difficult but there has been a lot of growth as well. The forced separation has made us appreciate and love each other more…on a deeper level….and due to that life has gotten a little richer. People who don’t even know us have reached out and those that already known us have done things or said things that I will always treasure. It all has made me want to be a different person…better somehow…in some way. I hope one day we can have the opportunity to payback all of the kindness and generosity that has been shown to us.
Holidays At 1 North 12/9/10
Last week LPCH had a small holiday celebration called the tree lighting. I wasn’t going to go Matthew was getting chemo and I didn’t feel like being celebratory….but our child life specialist dragged us out saying kids get chemo all the time and just pull along their IV pole…..She then added that Matthew will love the live singers….so I put him in his carrier and she pushed his IV pole….It was like coming out of hibernation only to find Christmas at your doorstep….There was a huge tree, a boys choir, food, and arts and crafts. They truly know how to throw a party here. At first I felt uncomfortable and just stayed back and absorbed the commotion….As I stood there I noticed one of the very sick teenagers I had seen in clinic….something was different this time….he still looked very sick….extremely skinny, black fingernails, and grotesquely pale but he was smiling….a very radiant, happy, healthy smile…. that he shared with his girlfriend as they held hands singing Christmas carols. Then I noticed another child dancing around his IV pole…skipping and laughing with his parents…His parents savored his every reaction and laugh. To the right of me stood another mother…. cancer had robbed her son of one of his eyes….His mother also had an eye patch….Come to find out she had been stricken with the same cancer… but there was no sadness that night. This Mother and child demonstrated true strength and love. The way they looked at eachother…how she adored him….All I could think about was what they had been through…together. Made my experience seem small in comparison and I admired her. I had shared this experience with my sister whom insightfully said “The other day I was praying and I was upset for you telling God that this cross was too much to bear….but then you hear a story like that and you think I will go ahead and take my cross thank you very much”….I feel silly when I complain or feel down …… So many things that I see will put my experience into perspective….. It made me ponder a comment made by one of our nurses…she said that she believes that many of these kids have old souls…The comment bothered me…to me “old” represents the end…something on its last leg….but that is not an accurate description….These children have appreciative souls….They really know how to live…passionately like there is no tomorrow. They appreciate every moment especially ones when they are feeling well. Noa has met a friend at the Ronald Mcdonald House who is dying of a disease that attacks her organs…she has had several transplants only to have her body reject and attack the transplants. At 8 years old she has been through so much….Her story is heartbreaking…she so yearns to run and play freely but her sick little body has many limitations….she tries so hard to keep up…I often see her holding Noa’s hand…so she won’t get left behind…..And if there is a place she is physically unable to go to she will tell Noa there are poisonous spiders there…..Noa hates poisonous spiders…. She is a wonderfully charming little girl….wise beyond her years…... I appreciate knowing her..….So yes these kids live differently…..but they still live joyously…they dance around their IV poles….they look at each other more lovingly…. more often….they smile while holding their girlfriends hand…. enjoying every healthy moment to the fullest….. wouldn’t you….. with death knocking on your door.
Matthews last round of chemo made him really sick….Each chemo has such a different effect on him….He looked so miserable…when he threw up it would just keep coming until there was nothing left……then he would dry heave…that’s what would finally make him cry…..figuring out how to make him happy is a challenge during these times….As a mother you want to make it better his cries trigger something in my brain….and when I can’t help him….well those are my darkest moments…. but we have been spared quiet a bit…Cancer has taken so much from some of these kids…and Matthew is a baby… he forgets easily….sometimes he will throw up and then smile and laugh immediately after…..everyone always says that he doesn’t even look sick….and compared to some he doesn’t…but being his mother I cannot help but notice his deficiencies…. Matthew has only gained 4 lbs since birth…and we are barely holding onto those…he also does not use his legs much….I am not sure if he is even aware that they are there…His neck muscles are also very weak……however intellectually he is very responsive and right on target for his age group. The doctors are constantly snapping their fingers in his face or making crazy sounds…testing him….because cancer and chemo will take that too…I’ve seen those babies….unresponsive with a blank stare. I pray for God to protect his brain….to keep his personality…to give him a chance…..he deserves it…they all do.
As of lately things have not been real great…it started off with me overdosing him on a drug called GCSF….once their white blood cells (WBC) are next to zero they give them GCSF which will help to rapidly build up their WBC count. Well I misread the dosage and gave him 10 times the amount….lovely I know….luckily they told me out of all his medications this was the least harmful to overdose him on….but him being a baby made them concerned enough to have his blood drawn in the ER everyday…they also took away my ability to make the same mistake and gave me prefilled syringes….The doctor then said she was worried about me and thought I might need counseling….I thought that was funny…I do need a lot of things but counseling is not one of them…I have never been more aware of my feelings…I have plenty of time to think and pray. So after the whole overdose behind us I thought I would make a quick trip home for my brothers birthday….45 minutes into our drive I noticed Matthew was very hot…sure enough he had a fever….our first real fever….this was now our 3rd trip to the ER in 3 days….and it put us back in the hospital. Presently his fever has subsided but he had been acting funny all day…very sleepy and very uncomfortable…crying every time I picked him up….I kept saying something is wrong and asked for a stomach xray. The xray came back with no clear indication of any problems…one of the doctors said maybe it’s his hernia…and as we pulled off his diaper I caught a glimpse of something red and infected looking in the crease of his leg….the source of his infection…they did and ultra sound and saw that his lymph nodes in his groin area are very inflamed….I told the doctor that I thought infected lymph nodes and cancer are bad signs….she said we will know more tomorrow and not to worry….she must not have kids…..So they started 2 antibiotics and morphine around the clock….and he is currently sleeping peacefully.
I was telling Ron and the kids that I want us to come out of this changed. We have a great family and I am very proud of them….but we took a lot for granite and in a sense we were not growing closer but only getting more busier….from here on out I want to live in an appreciative state. I don’t care if you cut in front of me in line….I don’t care that our tree is still not up….I don’t care that we have yet to start Christmas shopping….I hope that we can spend Christmas out of the hospital so that we can see our families and friends….I hope that Matthew handles his next round of chemo well…..I hope the doctor is right and the lymph node thing will be no big deal…..and I pray…. that God gets my family through this time….all of us.
Round Two 11/30/10
We are back in the hospital for 5 days as Matthew receives a new round of chemo….We were released from the hospital for about 4 days and this time went without any major mishaps….he had a few mouth sores and some more skin break down but not nearly as bad as the last batch and nothing a bit of morphine couldn’t fix. Funny I used to be hesitant to give my kids Tylenol….. Our new challenge is managing a child with special needs……granite his special needs are nothing in comparison to some but for us this is a whole new ball game….meds, dressing changes, feeds, IV flushes, temp checks, and managing his skin issues is quite a job….On top of that I feel like there are germs lurking everywhere….I’m contaminated, the kids are contaminated…Ron, the dog, our house. They keep telling me not to create a bubble baby and to try and give him as much normal stimulation as possible. So we force ourselves to be “normal” ….and they are right he loves the interaction.
After getting out and being “normal” for a while I am finding the transition from hospitalized to freedom hard and awkward. It’s just hard being here for days on end. I also found out recently that this what most of his first year of treatment will be like. Hospitalized for chemo and then released for a brief stint. That is a depressing realization….this lifestyle sucks…And I feel guilty and selfish for feeling burdened with the thought of a whole year …..Today was different since it was my first time going to clinic. Clinic was a bit shocking ….Nothing like being in a waiting room full of very sick and dying children to put you in the dumps…I felt like crying the whole time….It’s shocking what these kids are going through and nothing can make you get used to it…not time, not exposure…nothing. It’s harder to see the older kids…they look so sad and they also look a lot sicker…..The younger kids still smile and seem happy….Matthew knows no different this is what I imagine he must think life is like….The older ones know what they are missing out on…they know what it is they have to lose and every day they lose some more of it. Life is just so precious….and for some so short. I saw a bumper sticker today that read “Cancer Sucks” ….I have to agree…Cancer most certainly does.
I have not yet become used to being stared at or to see people whispering about you….I know it’s really uncommon to see a baby with this disease…. so a lot of it is a shock factor….In clinic one teenager with cancer just kept staring at us and then talking to his puppet…I could hardly look at him not because of what I saw but because of what I did not want for my son…It’s such an awful thing to think…. everywhere I looked in that room I saw things I did not want to happen to my child…..but silly me…. it’s already happening….I have to keep telling myself that I cannot live in fear of what might happen to him…At one point early in this process Ron and I had a conversation about all the things that can go wrong and finally we agreed that Matthew will be exactly who God has destined him to be…and we will whole heartily love whatever shape or flavor we get.
Once clinic was finished we went to lunch…even there I could not escape our reality….3 separate people asked what was wrong with Matthew…2 of these strangers stood at our table and just cried….the waiter joked about him not needing a haircut….I just wanted to stop talking about it….just for a few minutes or maybe through lunch….but their gestures and words were so kind that I found myself singing our same old sad song. Part of the reason I believe Matthew was causing so much attention was that Ron and I are now in charge of tapings and dressing changes. Ron had just changed Matthew’s tape on his feeding tube and I must admit he did look a bit ridiculous….Ron wanted to tape it real good so that he wouldn’t pull his tube out but let’s just say Matthew nor HeMan are going to pull that thing out….even the nurses had a good chuckle. Hopefully for his sake we get better.
Matthew has become everyone’s favorite patient. He is such a jovial little fellow that everyone leaves him feeling happy…They always say they don’t get many smiles and this kid will laugh out loud through a chemo treatment…I find him to be such an amazing person….If I could only enjoy life half as much as he does…Ron and I came to the conclusion the other day how lucky we are to be his parents…to be a part of him…to care for him…to love him….he brings us so much joy.
P.S In one of my posts I realized that I forgot to thank some very important people who have not only made a huge difference in Matthew’s life but mine as well. The nursing staff here at LPCH. If you have ever been hospitalized long term you understand how important having quality nurses is and we have been fortunate enough to have some of the best. Simply put they have made all the difference for us here. Special thanks to Nurse Christine and Nurse Silvia.
I hate Methotrexate
I hate watching him suffer
I hate it when he looks at me for help and all I can do is help hold him down ( I really hate that)
I hate that my baby has this disgusting disease
I hate the state of fear that I constantly live in
Can you tell things have been tough lately.....Tough is an understatement....The Monday before last Matthew had his first round of high dose methotrexate, which is a very strong chemo drug that kills rapidly growing and dividing cells. It is used for many medical reasons including terminating pregnancies. It also has been proven to be successful in the treatment of ALL. This particular chemo is no joke and has been hard on Matthew. When I looked up the side effects there were so many that they broke it down by which part of the body it affects. It can cause sudden death, blindness, and many neurological problems. One nurse said she saw a patient who was unable to speak afterward and another who could not control his body....I simply cannot digest these facts and am extremely bothered with what might happen to him. Even though chemo is necessary in treating cancer it also is poisonous to your body and organs.
Up until Friday Matthew was doing exceedingly well even to the point that they decided to release us Thursday to the Ronald McDonald house so we could have some free days till his next dose. Friday night Methotrexate reared its ugly head. It started off with just a few mouth sores and some skin break down. Our few days of rest and relaxation were mostly spent in the emergency room. Our first trip to the ER was Friday night when he managed to pull out his feeding tube. Saturday morning he had more sores and was vomiting....Saturday evening we clogged up his feeding tube with one of his meds....So back to the ER Saturday night and another round of holding him down so they could thread this feeding tube down his nostril....we got back to the Ronald McDonald house by 9:00pm. He was still vomiting and at this point there were traces of blood and tissue in his vomit....each time he threw up I was frantic with worry. As I wiped the vomit from his mouth he would bleed more. I realized that the sores in his mouth were bleeding....On top of all that his skin is literally falling off in certain areas like his neck and arm pit. Worst of all his skin fell off where he was circumcised and he would make these horrible sounds with each diaper change. Ron and I were doing everything we could to provide him with some sort of comfort....nothing was working and we felt like failures.....Here we are his parents and we are incapable of providing him any comfort or relief....the whole process was driving us insane. At one of my finer moments Ron exclaimed " I am just trying to make you happy" I responded that "no one or nothing can make me happy right now"..... from a mothers perspective nothing is more agonizing than watching your child suffer....when he cries my natural instinct is to help him but there are times that I am unable to do my motherly duty...... some days my love is just not enough...... At about 4 in the morning on Monday he threw up his feeding tube so back to the ER we go. In the ER they find something unusual in his stomach x-ray so instead of heading to 1 north we end up in the ICU. At this point I am just a wreck from all the trauma and lack of sleep. I was also angry that Matthew was suffering so much and getting him any pain meds was like pulling teeth. Finally I started to get really mad and began to get demanding and pulled the "I am going to walk out of here" card....with a feeling of utter despair I called my social worker.....I will do that sooner next time because magically the oncologists started paying attention and he was given some pain meds. From there the ICU decided that his stomach x-ray was nothing serious and sent us back to 1 north.
I now find myself at a weird crossroad. I want Matthew to get better but I have to ask at what costs.....The chemo is just so awful and with no guarantees I have a lot of apprehension.....What if none of this works and all he ever will know about life is this hell he is living right now...There is a tremendous amount of guilt associated with it all.....not to mention the tremendous strain this has put on our family...At the moment I feel emotionally drained...I know I need to be stronger....I think that has been a recurring theme in most of my updates.....but never have I had so much weighing on me and some days I just feel like scooping up his little body and running for the hills.
Matthew now has the typical chemo hair do....I will just rub his head and hair falls out in bunches....Up until now he looked so good and he still is the cutest chemo baby you ever did see...but he looks like he is on chemo therapy...and when we are out and about we are the ones that get stared at...I think my situation makes people feel uncomfortable.....When I am in the outside world you can feel like you don’t belong so sometimes it is just easier to stay in the hospital....here we are all the same.
Today I had a conversation with one of his doctors about any other possible routes we could take rather than the Methotrexate....She went into the whole "Your son is really sick and has a very aggressive form of cancer".....Ugh.....I am so sick of hearing that. So tomorrow he will get his second round of methotrexate and I will do the only thing I can for him...I will be here.
P.S Thank you to all who were a part of Matthew’s event last Saturday. It was huge success. What an amazing support group we have. A special thanks to Ashley for getting the ball rolling.
Halloween has come and gone and Matthews first Halloween in the hospital was uneventful but a special time just the same. I recently went home to attend Noa's first Halloween parade. I must admit it was a bitter sweet moment for me. I very much wanted to be there for her and Izahia, in hopes we could create some sort of "normalcy" in our lives. Sometimes "normal" activities are really hard for me.....I realized that I presently do not live in a mental state of "normal" and adjusting from my current reality to my old reality is very difficult. At her parade I could not help but to be acutely aware of all the babies. Dressed like little skeletons, cute pumpkins, chubby, happy, and healthy. I could not help but feel envy...there is so much you can take for granted. Towards the end I could barely keep my composure and was thankful to leave. I did not want anyone to see me crying.... something I do all the time now. On my drive home from the hospital I cry at what I am leaving....When I am home I cry for what is missing....On my drive back I cry for what I must face....Most of the time I am praying to God for strength to endure. By the time dinner rolled around I was a sobbing ridiculous wreck. Ron told me I should try to pull it together for Noa and Izahia...I told him I was trying but I don't think I was...Finally Noa said "You know Mom were pretty special too!" That comment made me laugh and helped pull me out of my state of overwhelming sadness. They are very special and I love them dearly so I need to be stronger for them and for Matthew.
Unfortunately Matthew's blood count is not high enough for him to get the bone marrow test. This is the big test that we are all waiting on. It will give the Doctors a better idea at what his prognosis will be. They continue to tell me how he has this crazy rare form of leukemia and that even though they know a lot about it they know very little when it come to treating it. I was also informed that his leukemia does not respond well to bone marrow transplants. I know the odds are stacked against us...I understand that the number one disease killer of children is now trying to kill mine. So what can I do when they tell me that all their science and medicine most likely won't work....I can become paralyzed with fear of the unknown....I can give in to my grief....I can lose hope...or I can pray... to a higher power.... to fix what man cannot. That is what I do. I pray for a miracle.
P.S Thank you everyone for your comments I do read them all. I wish I could respond to them but my time is very limited. However all of your kind words, thoughts, and prayers mean a lot to Ron and I.
I once read that having a child with a terminal disease is like a roller coaster with constant ups and downs….that is a perfect description….With Baby Matthew one thing is fixed then another goes wrong…He has been having stomach issues and the Doctors having been trying to pinpoint the problem. Finally it has been decided he is suffering from Mucositis which is painful inflammation and ulceration of the mucous membranes lining. It can occur anywhere along the digestive tract. The chemo for infant leukemia is extremely strong and aggressive. The drugs that are saving his life are also wreaking their own havoc…..and as we end our first round of chemo this Wednesday I am beginning to really see some of its negative effects on him….even though he still tries to smile in his eyes you can tell he is very sick and does not feel well. Other times he will cry out in pain…. In particular when he eats.…..It is such a frustrating process. At the moment he is also fighting off a fever. With his white blood count at nearly zero any flu or virus will defiantly send us back up to ICU and could be life threatening. So let’s just say I am feeling nervous, anxious, and sometimes I just feel sad. I will be glad when his body can take a small break before we start round two.
Today I was talking to doctors about stem cell transplants or also know as bone marrow transplants (BMT) since Matthew’s type of leukemia has been known not to respond well to standard treatment. I was informed that BMT’s are actually a last resort as they also have many risks but if needed that would be an option. They then asked me Matthew’s ethnicity. I explained that I am one of those halfbreed’s ½ Mexican and ½ Caucasian and that Ron is Caucasian (Sorry about my racial etiquette). They then informed me that, luckily for Matthew being mainly of Caucasian decent he would have an easier time finding a donor. They then went on to explain that the more racially mixed the fewer donors since Caucasians are more likely to donate their bone marrow. This struck me as sad since the patients here in1 North are of all descents, as we all know cancer does not discriminate. I would like to encourage anyone who may read this to think about donating their bone marrow; you could possibly save a child like mine. Here is one organization that supports bone marrow donors http://www.marrow.org/
The good news is that Matthew’s most recent lumbar puncture (a procedure where they pull spinal fluid from his back) showed only clear fluid. This means they found no Leukemia in his spinal fluid, which is a great sign because chances are his brain is Leukemia free as well. It also shows that the chemo is working. How well he is responding to the chemo will be clearer after his fingerprinting test on November 1.
Completely off subject but worthy of noting is that we also found great joy in watching the Giants beat the Phillie's. For a few moments that night in 1 North patients, nurses, doctors, and parents alike were able to forget…..regardless of what state your life may be in that was a great moment for all Giant fans.
Last Tuesday night Matthew went from calm and happy to screaming in pain. Then he started doing weird things with his muscles like keeping his legs real stiff and arching his back so much that his body was in the shape of a half moon. I of course began to freak out; he was inconsolable and was withering in pain. Nothing was working to relieve his symptoms. The Dr ordered a x-ray of his stomach which revealed some air in the lining of his intestines….sounds like no big deal but these air bubbles can cause extreme discomfort and when popped cause excruciating pain. So we were sent up to the ICU overnight. In ICU they discovered that he was overdosed on Magnesium. Somehow it had slipped through all their checks and balances and he was given a dose of Magnesium that put his level at 6.2 normal levels are 1.4. High Magnesium levels come to find out cause muscle spasms. Thank God it was only Magnesium that he was overdosed on and not something like his Chemo medicine, but the hospital is now investigating how it happened and it sounds like a pharmacist is in a lot of trouble.
I also had issues getting him any type of pain medication to relive him which was completely frustrating. The doses that they were giving him down in 1 North were so miniscule that they were not having any effect. I was beginning to come undone……By the time we got up to the ICU he had been crying in pain and discomfort for over 8 hrs. Once in the ICU a nurse was trying to help us get some relief but the doctor up there decided to try swaddling him instead since narcotics can slow down the gut. After all night of being in pain and all he suggested was swaddling, I just wanted to punch him in the face. I would have too if I was not so paranoid that they might slip something in his IV. In the morning when the doctors made their rounds I made a point of telling his boss what his suggestion was and she looked at him and said a slow gut we can treat with other medicine we need to manage his pain. Finally at 9:00am he got some pain relief. When the social worker came in to see us I began to make threats that I would be finding a new hospital that can actually help my son. She immediately expressed my concerns and suddenly people started to take me more seriously. His cancer doctors visited us up in the ICU and were apologetic they also began talking about a pain management plan which I had been asking for since we got to 1 North.
As of now he is only getting nutrition through his IV and it will be absorbed through his cells rather than his stomach until they can figure out what is going on with his “gut” as they keep calling it. Chemo is actually very hard on the body to process. They keep asking if he has any diaper rashes because they can get pretty severe but the only one with a rash is me from changing his diapers. The skin on my hands that have come in contact with his diapers is red, cracked and itchy. I can only imagine what it is doing to his insides……He will also be getting daily x-rays of his stomach to watch for any changes so far the x-rays have shown no new changes. Most of my heart ache now is watching the affects of this disease….whether it is seeing him in pain or watching daily as his weight decreases. Since we have been here he has lost 20% of his body weight and looks great but a little on the skinny side. I also still cry through any major medical procedure I just can’t get used to seeing his little body go through all these crazy things. You would think that after all this time I would be used to it.
Today we are out of the ICU and back in 1 North. The doctors came by and told me that despite everything that transpired in the last days he is responding very well to the chemo and they think that overall he is doing exceptionally well. Tomorrow he will have his last shot of chemo into his spine and then soon he will get a test done called fingerprinting that will give the doctors a better idea on how well the chemo is working and on his prognosis. I can’t help but to dread that upcoming test. I just so desperately want to hear good news and am terrified of all the possibilities.
I also wanted to thank Leisha for all of her eloquent and descriptive updates in particular the one about his “bloody stool” Ron and I had a good chuckle after reading that. J
Matthew turned 3 months old today with each passing day he seems to get better. Doctors use the words remarkable, unbelievable, surpassing expectations, and headed in the right direction when describing his current health status. Some of his genetic testing came back and he was diagnosed with a rare form of infant leukemia called 4: 11 translocation an aggressive subtype of acute lymphoblastic. It occurs in 4% of reported cases. Prognosis is not good I have been told…but that they knew this when we got here due to the way the leukemia was presenting itself. Once they told me that I decided not to specifically ask what my survival chances are….
I did a lot of that before hoping someone would give me some good news. Finally one doctor told me, "For you it is 0% or 100%, anything in between does not matter." Then he told me we are going for a 100%. So that is what I tell myself…100%.....100%.
From what I understand about infant leukemia is that it does not respond as well to therapy.
Many infants are unable to get treated because they do not get hospitalized on time.
In Baby Matthew’s particular case, the type of leukemia he has, many patients do go into remission but have a high rate of relapse.
With all of that said I am no longer googling for information I want to believe that he will beat this disease…..that his purpose in all of this is to further science so that survival rates of infant leukemia will improve. I believe in God’s will and that in all of this bad he will use it for good. We can only come out of each day thankful for a tomorrow.
Our days out of the ICU and into 1 North (1 North is the Oncology department at Lucille Packard’s Children’s Hospital) have been quite a transition. We went from the fast paced intense scene upstairs to a calmer and relaxed atmosphere in 1 North.
We are also surrounded with other children and families facing the same struggles as us.
Matthew is the youngest in 1 north but most certainly not the only baby our neighbor is a 5 month old little girl named Clara also battling leukemia. Our biggest adjustment is trying to give a voice for someone who is unable to utilize any words. Getting doctors to listen to me was a bit of a struggle at first in particular when it came to managing his pain but I think we
finally have everyone on board now. The nurses are absolutely wonderful here and I have formed bonds with many of them. It’s hard not too when you are always feeling so vulnerable their soothing ways have been of great comfort to me.
Matthew is receiving various chemo treatments every day. Sometimes they shoot the chemo in his spine, or IV others have been shots in his leg. The chemo is doing its job and is killing off all white blood cells. Unfortunately that puts him at a high risk for infection. The chemo is also discarded through his bodily fluids like waste, tears and sweat. These drugs are extremely toxic. One doctor told me that the hardest part of her job is not knowing the long term effects that these drugs will have. It’s a little alarming to have his diapers be considered toxic waste. But thus far his appetite is strong actually he wants to eat nonstop due to the steroids he is on.
The steroid also causes him to have what I call “roid rage” but is similar to mood changes you
might see in a body builder on steroids. His hair is thinning a bit but he did not have much to begin with. I was told he could lose his eyelashes and eyebrows as well but for the most part you cannot even tell he is sick. He smiles, coos, and is now squealing with delight. He has become the favorite patient of many nurses and doctors.
Tomorrow morning Matthew will have surgery to correct a hick man line that has migrated to far into his heart that we are hoping to be the cause of some irregular heartbeats. He also recently formed a hernia that we are just watching for the time being. They are still trying to level his blood pressure with medicine but we have been told that his kidneys have responded well to the chemo and are now back to their normal size and are slowly picking up function.
As I sit here and reflect on this time in my life I must admit I have never felt so loved. Our friends and families have been so supportive. Many things we just have not had to worry about because someone else has already worried and handled it for us. It brings me to tears every time and I am amazed at the compassion we have been shown. The encouraging words support, and messages that we have received along the way truly have made this experience bearable….and for that we thankful to all of you for in this heartbreaking time we can still find joy.
Today Baby Matthew has moved out of ICU and is now in the oncology department where they specialize in Leukemia. It is a huge accomplishment that I can only describe as bitter sweet. Our 10 days in ICU were eventful to say the least, every moment has been so intense. After they helicoptered us in from Monterey I was met at the ICU by several doctors all telling me my son was in critical condition and his organs were shutting down due to the leukemia that was now ravaging his little body. I must admit I thought they were lying even though we had just landed on the roof by helicopter.
The severity of it all seemed to be happening to someone else ….. not to me, not to my kids, not my family. Besides he was only 2 months old. Far too young to have cancer I thought. It wasn’t until the doctor told me Matthew had a 1 in 10 chance of surviving a medical procedure needed to bring his 800,000 white blood cell count (WBC) to a normal count of 12,000 that I realized he might die.
Matthews’s blood was no longer clotting putting him at a high risk for bleeding to death. His blood was also very thick. The doctor said normal blood has the consistency of apple juice, while Matthew's blood was thick like pudding, putting a strain on all his organs. Xrays revealed an enlarged heart, a spleen three times normal size, and his kidneys were swollen twice their size. He was also showing signs of some internal bleeding.
Then she asked me if I wanted to hold him for one last time…. a question a mother should never be asked…my world was falling apart. It was then that I asked Why?? Why my baby??…I would soon learn the answer to that question which was why not my child. Why would we be spared…. we were surrounded by sick and dying children. Parents wandering the halls with the same look of despair that I had, unashamed to hide our raw emotions. It was notuncommon to see grown men crying or hear a mother sobbing. This was my worst nightmare. As the days progressed the doctors diligently worked to save his life.
His first round of chemo was shot directly into his spinal fluid. The next day his WBC had dropped dramatically which was a good thing except that this was also releasing thousands of toxins into his body. Then a new battle began to fight the tumor lysis syndrome. His little body would swell leaving him looking like someone else’s child…. He would cry in pain and I could do nothing but watch. Never had I felt so hopeless… unable to console my crying child. His already damaged kidneys were barely hanging on…but they did hang on and by the grace of God we left ICU.
Tomorrow his new battle begins…….Matthew is very strong and will defiantly give the cancer a run for it’s money and all I can be right now is thankful for the doctors, nurses, family and friends who have rallied around us. Tomorrow we will find out more about his particular strain of cancer as the results of his genetic testing come in… not that it matters….. my child has cancer and there is nothing I can do to change that horrible fact.