Hailey was born Sep 2001 in Columbus, OH. She had a really wholesome childhood. 2-Three ear infections, just a few colds, nothing critical. She was all the time my little hellion. Now I notice that preventing spirit was for the laborious battle forward. Then when she was Three half of in Apr 2005 I seen she had fairly a little bit of bruising. I waited a few weeks considering she will need to have had an energetic week. Then on Apr 12, I took her to the pediatrician considering her iron was most likely low and he or she would give me a script and off we’d go. However….that is not what occurred. After checking Hailey the Dr. left and returned with a nurse and ask Summer season, our Eight yr previous daughter, if she might step out with the nurse. After they left I checked out her and stated "you are going to make me cry" and he or she stated "I will cry". The Dr. stated she thought it was a viral an infection or leukemia, however with out blood take a look at she wasn’t certain. She felt strongly that it was leukemia and he or she wished to offer me the worst case situation in individual, as a result of after the blood take a look at she can be contacting us by cellphone. So she despatched us to Kids’s Pressing Care to have labs drawn. We talked to her on the cellphone after she acquired the outcomes and he or she stated that it was leukemia, to go dwelling, pack some garments after which head to Kids’s Hospital. She would name forward and inform the hospital that we had been coming. In my darkest hour!
I had misplaced my mother final 12 months to breast most cancers, so I knew the horror of the "C" phrase and watching somebody you’re keen on die slowly. I simply could not imagine that now my daughter had most cancers, life couldn’t be so merciless. Somebody please wake me from this horrible nightmare!!
We had been admitted to the hospital that day. The subsequent day she needed to be awake as they drove nails into her bone (would possibly as properly have been nails) for the bone marrow aspiration. She was awake as a result of her platelets had been so low they could not put her underneath. The take a look at got here again detrimental for leukemia. Yea, I hoped it should be viral, however I feel the docs nonetheless leaned in direction of leukemia. They despatched a few of her marrow to OSU for testing and it got here again that she had Monosomy 7. Which signifies JMML. Which was not excellent news. Throughout this time, I’m strolling round in a state of shock. I am not consuming, I misplaced 18 lbs that I did not must lose. Most of it’s a fog. I keep in mind I hated to see the Dr’s. coming as a result of it felt like they all the time had extra dangerous information. I puzzled how might this be, she has all the time been so wholesome and if she was going to get leukemia, why this one. Could not it at the least be a great one. (as if there’s a good most cancers). I didn’t know that there have been various kinds of leukemia, nor did I do know what a bone marrow transplant entailed. I’m now studying many issues that I want I by no means had too.
Subsequent got here her broviac. A catheter positioned in her chest to offer her IV vitamin and transfusions. We head all the way down to pre-op, the anesthesiologist refuses to place her underneath, saying her platelets had been to low and it was to harmful. I instructed her that Hailey’s docs had been properly conscious of what her counts had been, that we couldn”t get her platelets above 47,00zero and that’s together with her getting them twice a day, she nonetheless refused. I used to be pissed, Hailey had been NPO all this time, begging for one thing to eat or drink.(she had gone all evening and seven hrs right this moment with out something). We return as much as J5, our oncology unit. The docs stated they do not perceive our sufferers and I am considering "no, however they know their job and so they say it is harmful". So we needed to rise up the subsequent day and take a look at all of it once more and naturally I’m much more terrified this time after the one had refused. I keep in mind telling myself Hailey would come by it okay as a result of she was going to beat the most cancers and to do this she needed to come via this okay. Which she did, they gave her an infusion of platelets through the process. She had actually dangerous bruising throughout her chest from it although.
A number of days later our Insurance coverage Co. calls telling us we will not have our BMT in Columbus. They don’t have a contract with them for a BMT. That is all we’d like after the bomb we had simply acquired about her dx. We solely reside about 35 min. from the hosp. So we would be able to go dwelling some and spend time with our older daughter, Summer season. Our household & associates are right here. Our Dr. has seen 12 different instances of JMML which is uncommon since it’s so uncommon. We favored the truth that he had expertise with JMML. We didn’t wish to go away, it might be totally different in the event that they had been sending us to a different hospital for higher care however not monetary causes. So we known as the monetary workplace on the hosp. and so they got here to our room to speak to us. They stated we had sufficient on our plate proper now simply coping with her dx, to allow them to fear and maintain the monetary facet of it. Which fortunately they did with out us having to do a factor.
Hailey acquired 5 days of Chemo to stabilize her, so they would not have to offer her so many blood & platelet transfusions. They gave her Ara-C, Fludarabine and he or she stayed on Cis Retinoic Acid till BMT. She did actually good, she solely threw up the primary evening. Then we lastly received to go dwelling after being there for Three half of weeks. Grandma got here down from Michigan and took care of Summer season whereas we had been within the hospital.
We lastly acquired some excellent news! Dad is a 9/10 match. YEA!!! Which is uncommon for a dad or mum to match. I had saved her wire blood at beginning however we could not use it as a result of JMML is within the stem cells, so we might be making her go via transplant to show round and provides the JMML proper again to her. We hope to offer it to analysis. Did not should get blood or platelets that always after taking the chemo. We might lastly get her platelets over 50, they even went above 100.
We had a gathering together with her doc about preparing for BMT. He stated Hailey was in remission from the chemo she had acquired. So my ideas are lets wait on the BMT and see what occurs. Why ship a wholesome little one to transplant. You’d by no means know something was fallacious together with her. She runs & performs similar to another Three half of yr previous. In actual fact she all the time makes me anxious with the best way she tough homes with these tubes popping out of her chest. After all the Dr. stated no, we have to hit her now whereas her most cancers cells are down & dormant and he or she is wholesome. The much less chemo he needed to give her previous to transplant the higher.
Our Dr. selected to take away her spleen. He was afraid the most cancers cells would pool down within the spleen, which was taking place. She had a severely enlarged spleen and his ideas had been we’d not be capable of kill all of them with chemo. She additionally had a 2nd broviac put in. So now she has 2 double lumens. I am questioning how a lot stuff are they going to be placing in her that they want four strains. The operation took a looong 5 hrs. She had a laparoscopy. It took so lengthy cuz her pancreas was shut and so they had been anxious about nicking it. For precautionary measures she spent the evening in PICU. I do not ever wish to be there once more!! I assumed J5 was miserable however the youngsters smile, play, journey bikes down the corridor… I wasn’t ready for PICU and the youngsters I seen there. Nor was I ready for a way sick and weak Hailey was. I can nonetheless see her simply laying there with all of the tubes popping out of her and me simply watching the displays. The subsequent evening we had been again up on J5. I used to be so glad I wished to get out of PICU. Hailey had a tube with a bulb on the top going into her facet to examine to see that they did not nick her pancreas. The surgeon is available in at 6:00 the next night, offers her some morphine and yanks the tube out, places a bandage on it and sends us on our means dwelling. The subsequent day she is using her huge wheel out to select her sister up off the bus. Kids are wonderful with the best way they bounce again. My sister-n-law, Shawn, got here down from MI for the operation and he or she actually helped out.
We ended up within the hosp. a few instances between dx and transplant for infections together with her line. So we”d keep a few days then they might ship us dwelling on IV antibiotics. In actual fact her transplant was delayed every week due to an an infection. We began BMT on Jun 15, 2005. So we went from dx to transplant in 2 months.
The day we checked in for BMT, I keep in mind sitting there rubbing Hailey crying cuz I would not be capable of contact her pores and skin till after transplant and we had been dwelling as a result of I’ve to put on gloves on a regular basis, do not wish to give her something since she will not have any immunity. Although I did give her kisses on the top & hugs all through the keep.
We had been allowed four individuals to assist us with the BMT isolation. They helped us maintain our sanity. We had my dad, Russell, my brother’s spouse, Steph, my greatest good friend, Lea, and my mother-n-law, Becky. Generally they might come up and spend the evening with one in all us or come by for just a few hours to offer us a break. Grandma and I took turns between the hospital and the home to maintain Summer season. Daniel, dad, stayed virtually each evening on the hospital besides once we would make him go dwelling. My brother took care of Daniel’s work for him, I do know this created a number of additional work and stress for Bryan. I truthfully do not know what we’d have accomplished with out household.
Our doc adopted the EWOG protocol. No radiation. For Hailey’s conditioning, she acquired four days of Busulfan, 2 days of Cytoxin and 1 day of Melphalan (she was not a contented camper that she needed to get a sponge bathtub each 6 hrs for 48 hrs cuz of the Melphalan, to forestall it from burning her pores and skin) then a day of relaxation. Then the day of transplant got here, which is melodramatic, cuz all they do is grasp a bag of marrow which appears like blood, then the nurse stays in there together with her consistently to watch her the few hrs it takes. On a regular basis we stored ready for her to get deathly sick from the chemo, she by no means did.
The BMT isolation was strict. We had a small anti-room the place we needed to maintain all our stuff. We washed our fingers in there and gloved up. We needed to put on gloves always whereas in her room. Besides when sleeping. We had to ensure the first door was closed earlier than we might open the door to her room. One thing to do with detrimental ionization. Something going into her room needed to be cleaned within the anti-room completely with alcohol. If something fell on the ground it needed to be kicked out of her room. Arms cannot contact the ground. Then clear it within the anti-room earlier than taking it again in. Hailey had a half of hr to eat off her meals tray then it should be eliminated. Anytime she received off her mattress we needed to put slippers on her which weren’t allowed to the touch her mattress. As a result of they’d touched the ground. We weren’t even allowed on her mattress. Earlier than isolation I slept in mattress together with her whereas on the hospital. The choice was a sofa that was laborious as a board, or a recliner that will propel me throughout the room. Each out and in of isolation, identical deluxe sleeping preparations. Looking for some humor someplace. I used to be simply pleased that we might keep together with her. Every part in her room was wiped down completely on a regular basis. Her sheets modified, the mattress wiped down, a day by day bathtub, even our linens needed to be modified day by day. To carry her we needed to robe as much as maintain a barrier between us. You do no matter it takes!
Then round day 5 or 6 her mouth sores actually kicked in. She would simply lay in mattress, no enjoying, no consuming, no speaking, she would solely rise up to make use of the restroom or for her day by day bathtub. They put her on TPN (iv vitamin) on day 7. (which she ended up having to go dwelling on, she took it 12 hrs each evening for a month after being dwelling). She began throwing up blood, the place she was swallowing it from the mouth sores that go all the best way down their throat and into their abdomen. They stated it was regular which eased my thoughts some however nonetheless laborious watching her go via it. The docs stated she was doing nice, that her mouth sores weren”t dangerous in comparison with what they could possibly be, we had been diligent together with her mouth care. Which with mouth sores it was horribly painful for her and heartbreaking for us, however we didn”t need her to get an an infection.
She began grafting on day Eight, which is on the early facet. They put her on phentinol which is stronger than morphine as a result of she was having a bit little bit of response to the morphine they’d her on for the mouth sores. She had a relentless push of it each hr after which she had a button she might push each 15 min to launch extra as she wanted. That means they may monitor how a lot ache she was in by how a lot she pushed her button. It will register if she pushed it even when it did not launch any meds. She confirmed indicators of delicate GVH (graft versus host, Daniel’s marrow attacking her) on the pores and skin round day 13 so that they began her on steroids.
Round day 17 her liver swelled, her Bilirubin went up and he or she complained of abdomen ache. They did an ultrasound and located sludge within the gull bladder however blood circulation via the liver regarded good. Day 22 they did an x-ray on her stomach nonetheless making an attempt to determine what the ache was from. She stored throwing-up and having watery stools. Their greatest guess is the ache is likely to be attributable to the extreme chemo that it ate her intestinal lining up and it’ll take time for it to heal itself. They’ve ran all types of take a look at ruling out this and that. Day 26 they’re doing a rectal biopsy to see whether it is GVH. Her take a look at got here again clear, no GVH. Yea! (at the least not within the organs) she nonetheless has it on the pores and skin. She ate a tiny bit lastly, it is a begin.
Hailey was being imply to everybody however her dad & me, and her grandpa who she ignored however was not imply too. I might perceive the docs & nurses however she was even imply to our household who was serving to us out and which she normally loves & adores. She wished us to do every little thing for her. We gave her meds, took b/p… I feel it was a mix of steroids, isolation for two months and feeling crummy. She was simply so depressing. I instructed her she did not have to speak to individuals, however to not be impolite. It was like I had a distinct little one, this wasn’t the Hailey that I knew. Nonetheless she held up higher than I’d have. They certain are troopers.
Hailey lastly was allowed to go to the BMT playroom, which I needed to trick her into going as a result of she had no real interest in it and he or she use to like the principle playroom. Then they let her sister, Summer season, go in together with her since Hailey’s ANC was up. (has to do with the white blood depend and skill to combat an infection). They each received a kick out of that, they’d not been collectively for five weeks. Summer season did come to the hospital fairly a bit throughout our keep. She would go all the way down to the cafeteria with us, or we’d go to the principle playroom on the ground and do issues together with her. She would even come and hand around in the anti room some and look via the window at Hailey or open the door and discuss to her a bit. Hailey didn’t lose all her hair, but it surely certain received skinny.
On day 40, she had one in all her broviacs eliminated in order that we might go dwelling in 2 days. We might have left 2 weeks earlier than: her blood counts had been excessive sufficient apart from this tummy ache. It hadn’t gotten any higher and so they had been nonetheless guessing, however at the least they’d dominated out a number of issues with all of the take a look at they’ve run. It is simply irritating not figuring out. In any case the docs thought she’d really feel higher and heal quicker at dwelling. I certain could not wait!!!
We got here dwelling Aug 5, 2005. 7 weeks from admission. Hailey’s angle did an about face instantly after returning dwelling. She was smiling once more!!!!!!
At day 70 she was having bother together with her magnesium & potassium degree however since we had been weening her off her Tacrolimus (anti-rejection drug, fk506) which was consuming her magazine, we had been hoping it is going to degree out. Magnesium ranges have an effect on muscle tone and may have an effect on the center. Hailey couldn’t maintain down her potassium med, so we needed to put her on an iv drip at evening with these vitamins. She stayed on the iv a couple of month. Hailey began bending over choosing issues up, trotting at a quick tempo. Her power actually began bettering. Once we first arrived dwelling, she was so weak, she would fall typically whereas strolling, if she bent over to select one thing up, she could not elevate again up. She knew it wasn’t regular, she ask me what occur to her power? She is not fairly as much as par but however on her means.
Day 82, Hailey was weaned off her steroids, with that we dropped 2 different meds. She has gone from 9 totally different meds twice a day down to three. On day 110, we went off the Tac, she received GVH of the pores and skin once more, she broke out in a rash that drove her nuts with the itching and it regarded horrible. The docs simply had us use steroid cream on her. I used to be anxious we’d have to return on oral steroids. They are saying a bit little bit of gvh is nice that it’ll additionally combat the leukemia cells if there are any left. I certain hope so! Day 150, she not has watery stools. I used to be so pleased, it is not regular to have it for four half of months, I used to be actually starting to fret that one thing was fallacious.
We’re a bit previous day 180 and to this point Hailey is doing nice. She has not wanted to get an IVIG in about 7-Eight weeks, her degree has been above 800. We began stepping into month-to-month now. Her HGB is 14.2 and her ANC is above 9000. So all her counts are good. Her chimerism was checked every week in the past, and he or she is 100% donor!!! She had her 2nd broviac eliminated on Dec. 30 – What a strategy to begin the New 12 months! We’re nonetheless underneath heavy restriction at dwelling. Firm to a really minimal. Hailey is to solely go locations that are not crowded and should put on a hepa masks and gloves. No quick meals. Nonetheless on a low micro organism food regimen, snacks should be individually packaged. It will likely be good once we might be "considerably" regular once more, however I am not complaining. I am pleased so long as she is wholesome.
Gone ceaselessly is my harmless little one. Now I’ve one which worries about germs, being caught with a needle, being sick, dressing modifications… Issues four yr. previous ought to by no means should face. Generally I simply watch her giggle and play, I wish to seize the second and maintain on to it. The worry by no means leaves, it’s a fixed companion now.
It’s so laborious for the siblings additionally, we mustn’t overlook them. They undergo a lot. Summer season joined a 6 week sibling oncology help group at Kids’s sponsored by the Columbus Blue Jackets (hockey). She went to her 1st hockey sport and thought that was cool. She had a good time and actually cherished it on the conferences. Made her really feel particular too. I take a look at each Summer season & Hailey as my HEROES.
I wish to finish this with a paragraph I discovered in my most cancers restoration pamphlet.
I simply wish to be a child once more.
The odor of grass on a spring morning.
The splash of a swimming pool on a summer time afternoon.
The aroma of French fries at a rustic honest.
The crack of a bat in opposition to a ball.
The laughter of associates doing foolish issues.
Per week at summer time camp.
The sounds, smells and experiences which are a part of life for most youngsters are sometimes sadly lacking from the lives of youngsters with most cancers.
They’re typically confined to scary hospital rooms or to their properties.
These treasured youngsters miss out on lots of the easy…
Joys of childhood
Joys which are actually the most effective components of being a child
Joys that present recollections that final a lifetime.
Tami, mother to Summer season (Eight) and Hailey (four) JMML
* The JMML Basis (www.jmmlfoundation.org) publishes the tales of youngsters and their households affected by JMML. Please keep in mind there are a lot of methods you may assist us to assist them. Go to our “The way to Assist” pages to seek out out how one can present your help.