Hello my name is Hazel. This is me with my Mommy and Daddy (Tim and Lynn Altbaum) and big sister, Raya. I was a typical 9 month old, enjoying learning to crawl all over and busy playing with Raya and our dog, Zara.
Mommy took me to the doctor for my well baby check-up and they took some blood to check my iron levels. They were borderline low so they told mommy she needed to take me to Rady Children's Hospital for some more blood tests. It was Monday, August 3rd, a day I am sure Mommy and Daddy will never forget. Just a couple hours after they took blood, Mommy was called to bring me to the hospital for more tests. That was the first night we spent in what Daddy calls "Hotel Rady." The next day, they put me to sleep and I had some bone marrow removed to check for Leukemia.
Because I had no other symptoms and this was really just found by "accident", they could not find enough leukemia cells to diagnose me. So they sent us home and continued to monitor my blood and wait for results which took over a week. I was able to play with Raya and Zara, sleep in my own bed, try new foods like cheese, turkey, peas and life seemed kind of normal for a few days...I even got to go in our new pool.
Ten days later on Thursday, August 13th, Mommy and Daddy got the news that I have Acute Myeloid Leukemia (AML), a rare form of blood cancer that only 500 kids like me get each year. We checked back into Hotel Rady on Sunday. Mommy and daddy set up all my toys from home in my room that I will be in for at least the first month. The following day I had an operation to place a thing (Hickman Line) into my chest so they can give me chemo to kill the bad cells, do blood tests, and give me other medicines.
I have now completed my first round of chemo and I am hanging out at the hospital waiting for all those yucky cells to go bye-bye. We are all just taking it hour by hour and day by day. I keep hearing everyone talk about roller coasters and peaks and valleys. Sometimes I like to play and try and walk and sometimes I just feel like having Mommy or Daddy rock or snuggle me.
I feel so loved by all my family and friends. I have had lots of visitors and people bringing me gifts. Now I need to make sure I don't catch any germs so I won't be able to have friends come and play. Mommy and Daddy will update you along the way. We think we might be in the hospital for 4-5 months.
I know my Mommy and Daddy have been handling this privately, are still trying to process our world being turned upside down and aren't ones to ask for help, So I thought I would let you know what is happening. Fighting cancer takes lots of time and lots of money.
Thanks for reading my story and for helping me, Mommy, Daddy, Raya and Zara with this journey.
Mommy and Daddy's friend Rachel wanted to share some information too.
My name is Rachel and I have been friends with Tim and Lynn for a long time. I have also been fighting to find cures for blood cancer especially for children like Hazel for almost 20 years. I have been on the Leukemia Lymphoma Society (LLS) San Diego/Hawaii Chapter's Board of Trustees for the past 10 years. I know how hard it is on families to deal with childhood cancer. It takes a toll on the entire family emotionally and financially.
Thank you for your generous support of the Altbaum Family and supporting the "Healing Hazel" campaign. Please keep them all in your thoughts and prayers. You are welcome to reach out to me with any questions: 858.449.8060.
If you would like more information about AML please go to the link below. We also encourage you to donate blood/platelets for all blood cancer patients' benefit.
We left off when I was last inpatient in November for chemo treatment that was supposed to bring my leukemia level down enough to be able to receive a second transplant...unfortunately that did not happen.
After fighting off two blood infections inpatient, I was discharged two days before Christmas. I am still at home on an IV antibiotic which mommy and daddy administer every 8 hours, everyday. This is to prevent one of the infections from growing back which it often can and to hopefully prevent any others from developing.
When I went back for my follow up bone marrow test it showed my level of leukemia was still 16% down from
32% but not below the 5% they wanted to make it possible for me to move forward with another transplant.
So what happens now?? All conventional methods of treatment have failed, what are my options? They weren't looking very hopeful or hopeful at all until we were referred to this new research lab in San Fransisco, Noteable Labs, https://notablelabs.com. They have done three rounds of testing of my leukemia cells against FDA approved cancer drugs, even if they are not standard AML drugs to see what drugs or chemotherapies may be able to knock out this darn (DAMN) disease from my body.
So with the results we were given We decided on a lower toxic option to let my body heal a little bit after returning from the war I just served in (again!). I just completed the second month of that round of treatment and unfortunately that combination of two oral drugs and two IV drugs did not work against my disease and it is progressing.
While on this last outpatient treatment I was able to do a few fun things with my family, I went to play in the snow, I went on a boat, I took a ride in the train up the San Diego coastline, and I was SO happy at the Happiest Place on Earth....Disneyland!! We were generously gifted a two night/two day stay from Avas Angels of San Diego and I had such a memorable time I am still talking about it!! We have tried to enjoy time together as a family as much as possible, you never know what tomorrow will bring.
Up until now you would probably never know I was a child living with leukemia. But after that heavy inpatient round of chemo in November knocked my hair out and fast it's pretty obvious. Within the last week I have not been feeling great. I have a bit of a runny nose and cough, I had a tear in my bum that brings me a great deal of pain since with no immune system it is hard to heal, and I just don't quite feel myself. I enjoy Raya being around she always seems to be able to bring a smile to my face. We really enjoy singing and dancing together and being Altbaum princesses.
Leading me to what's next...we move to the little more heavy option of an oral chemo and an IV chemo, again outpatient and again a month long treatment. I was supposed to start that treatment Monday and daddy got a phone call that insurance has denied coverage for these medications. What!?! I need this medicine!!! It sounds like one of the last options available to treat me.
We are so thankful for all the generous donations from family, friends and strangers we have received. This fund may be what pays for this next round of chemotherapy.
To be continued...
As I wished I spent my birthday at home!! Mommy and daddy threw me a fun party at home. It was small but so fun and one of my favorite princesses, RUPUNZEL came too!!! She painted flowers on my arm, read Raya and I stories and sang to us...she even lit a lantern and we made a wish as it went off I to the sky. Everybody sang for me and I got to blow out my number 2 candle. I loved my birthday party and am still telling everybody about it!!
After my birthday we started getting ready for Halloween. I really enjoyed visiting the neighbors houses and seeing the decorations. Everyday I'd ask to go see the witch and the ghost and the pumpkins. Raya and I both got to be Rainbow Dash my little ponies. We had fun trick or treating but didn't stay out very long because we got scared as it got dark. We got plenty of candy though!!
Halloween night as mommy was moving my hair to the side she noticed a bump on my temple. It wasn't there one minute then it was the next! I didn't bump my head on anything and here was no bruise or pain SO mommy became concerned. She called my doctor and was able to get me in to see him the next day. After initial review by my doctor, he believed it was a Chloroma, https://en.m.wikipedia.org/wiki/Myeloid_sarcoma. To confirm I had to get an MRI and a biopsy done. I was inpatient for two days taking care of those procedures and I could eat or drink during most of that time because I had to be under anesthesia for both procedures. It was a LONG two days for us!! After review it was confirmed a chloroma which meant we had to get moving on treatment sooner than later. This meant our plan to stay home for the holidays and then head inpatient for my next round of chemo was not going to be possible.
We had two amazing events happen just following news we would be going inpatient soon. A very pretty sparkly jewelry store, Kendra Scott, held a fundraiser for me. I was so excited I was able to attend. They had candy, cookies, playdoh and coloring books, some of my favorite things!! It was fun and we are so thankful for everything! Then the next day, Raya and I were the fortunate recipients of room makeovers by the non-profit group Savvy Giving by Design. We each now have amazing hideaways and comfortable places to relax and play in. I only got to enjoy mine for a week but I took some of the decorations with me to the hospital to make it feel more like home. Raya has been enjoying spending time in her new room to keep her busy while I am not there. We miss each other a lot and thankfully we can FaceTime to still talk and be goofy together.
Also, Mommy and daddy's friend came over early and decorated the house for Christmas/Hanukkah. Secret Santas from all around made special deliveries for us. Raya and I got to write our letters to Santa and hand deliver them to him when we visited. I was a little scared of him and didn't want to smile but her really was a nice man. We asked him if he could come early in case I would not have the chance to be home and he agreed. We made cookies and set them out for Santa with carrots for his reindeer and they ate it all!!! Raya and I enjoyed a very special early Christmas together. I really enjoyed opening my presents and playing with new toys!
On November 15th, I was admitted to the hospital to start my next round of high dose chemotherapy. For 6 days I received chemo through my tubies. I handled everything very well with just a little upset tummy for a few days. I had good energy and loved walking (running) around the halls. Going downstairs and seeing the hospital model choo choo train. Raya came to play with me a few times and we even had Thanksgiving together as a family at the hospital. Until I started to get a runny nose and then fevers. The runny nose tested positive for rhinovirus (common cold) which means I cannot leave my room as I am considered contagious. My fevers were a result of an infection common in kids like me with no immune system, I was put on two different antibiotics and the fevers stopped in about 2-3 days. My nose is still running but likely will resolve once I have a little bit of an immune system. To make matters worse flu season restrictions started at the hospital last week which means no visitors under 18 (Raya can no longer visit in my room) and only two people besides mommy or daddy can have a wristband to see me. It gets pretty boring sitting in the room all day. I play playdoh, watch the iPad, snack a little, play with princesses and run around a little but I can't go very far in this room. The last round of chemo was very hard on my skin and I developed a red rash (like a burn) on my arms that we have been putting lotion/ coconut oil (the yummy lotion) multiple times a day. As well most of my hair is now gone. Just a week ago I had a full head of hair and now I'm barely holding on to what's left. I am a little confused where it went. Mommy ys says the bad medicine made it go bye bye, I know she is sad.
We are really hoping my immune system recovers enough to give me a chance to get home and play with Raya, sleep in my own bed, and give me a break from this place. Tomorrow marks three weeks since this stay started. On Thursday December 8th Mommy and daddy have a meeting with my doctors about my next transplant. That's another scary road to think about but we know we have to go down. Day by day is all we can do around here.
Hope everybody is doing well and enjoying the start to the holiday season!
The drug, Mylotarg that was supposed to wipe out the remaining leukemia unfortunately did nothing for me. It is a trial drug that has worked extremely well in kids like me, but not me. My level of
Leukemia was greater following Mylotarg than before. How? What? How does a treatment just do nothing? No answer just, sometimes the cancer cells are resistant to some treatment. With the idea that the next route in treatment for me would be to go inpatient and receive harsh toxic chemo Mommy asked the doctors to reach out to my original bone marrow donor to see if he was willing be able to donate more cells so we could continue the route of Azacitidine and DLI, donor lymphocyte (a type of cell) infusions. This was the regime that significantly decreased my level of leukemia a few months back so it was worth a shot asking.
That amazing donor agreed almost immediately and within two short weeks donated and I started a new course of Azacitidine (low dose chemo) followed by DLI. I have received three rounds of that and am getting ready for my fourth round of Azacitidine, next week. This means everyday I am in clinic to receive chemo. I had a bone marrow test done after two rounds and it looks like the level of leukemia and abnormal cells are progressing. I have been tolerating the treatment really well, it is allowing me to have a good quality of life at home, and my hair is growing back. I love dancing, singing and playing with my sister Raya. I copy everything she does and mommy says I'm starting my terrible 2's?? I don't know what that means but she doesn't sound too happy when she says it. My appetite is still pretty limited but I do a decent job eating. I enjoy eggs, avocado, chips, French fries, yogurt, pizza, milk and a few various snacks.
Although I am home my immune system is still extremely low. I am mostly on house arrest although we have broken it a few times to go to the zoo. I love the zoo and riding the choo choo train. I like to see the monkeys, lions, and giraffes. I ask mommy and daddy often to go to the zoo, they take me for short trips and I wear my mask so I don't get any germs. In addition to my weakened immune system, I have been needing platelet (part of your blood that allows your blood to clot) transfusions about once a week and red blood transfusions every 2-3 weeks. This is because my body is having a hard time producing any of its own or the leukemia is attacking my cells I am producing.
In August I passed my one year cancerversary (one year since being diagnosed) and this past year I have (from what mommy and I remember);
-Spent 133 nights inpatient
-Spent at least 88 outpatient days in clinic for labs, chemo and bone marrow tests
-Had two surgeries for my lines (tubies)
-Received 13 bone marrow tests (received anesthesia for each one)
-Received 9 different chemos broken up over 55 days
-Received dozens of platelet and blood transfusions
-Received a bone marrow transplant
-Received at least 68 dressing changes, the left side of my chest has not been exposed to air in 14 months
-had to wear an aqua guard on my chest for every bath since August 17, 2015
-Beaten leukemia once and fallen victim to it again
-Had 4 chest X-rays, 1 CT scan, 3 echocardiograms, and a hearing test
-Have received 5 donor lymphocyte infusions, getting #6 in two weeks
-Celebrated my first birthday in the hospital
I don't get to do things friends my age do but I do get to be home for now and with my family and that makes me happy. My second birthday is tomorrow, October 12 and my wish to celebrate at home looks like it will come true! We are not sure how long I will be able to remain home after that. Since this regime has ultimately not gotten me into remission the doctors plan is for me to have to undergo a round of chemo inpatient which will be a 4 week stay followed immediately by my second bone marrow transplant, estimating a 6-8 week stay. We are scared, my doctor says I will get sicker this time around. Mommy hates that since right now on the outside I seem happy and healthy, they have to make me sick in attempt to get me healthy again.
I will try to post once we know what the next plan of treatment is and when I will have to go back inpatient. But until then I will be home to enjoy my birthday and cake!
The results from the last marrow test I told you about showed that my leukemia level was progressing quickly however that test was taken before the third dose of Azacitidine was really in my system long enough to be effective and before my third donor infusion was given. SO instead of going off that test that showed rapid growth the Seattle doctors and My doctor conferred with each other prior to giving me my next treatment plan to recheck my marrow and level of disease and guess what!?!....it went DOWN!!! Not gone, but significantly decreased! This means that the drug and donor infusion combo was finally starting to be effective! However, since we had used up all my donor cells and it still wasn't at a negative status the doctors still thought it was best to move on to a little heavier and targeted drug for me.
So I did a week of outpatient chemo again with decitabine (sister drug to the Azacitidine I was on), which was followed last week by a drug called Mylotarg. I had to be inpatient for that drug and got two doses over 4 days. Mylotarg is an antibody chemo and is supposed to go after and kill the cancer cells. It is used widely in research hospitals and mommy, daddy and my doctor had to work hard to get it here in San Diego so we did not need to travel for it. My body handled it really well with no side effects and I Was able to go home a few hours after the last dose was given.
Unfortunately, while killing the cancer cells it also wiped out my immune system a little more than we would have all liked and I ended up inpatient Monday night with a fever. Blood cultures have remained negative, and fevers are starting to be fewer, lower and I am starting to act and feel a little more like myself, Hazel-nut . It was a rough Tuesday and Wednesday, I did not feel good, was very sleepy and sad. The last two days have been a little better but I really wish the fevers would go away so I can go home and play. I miss Raya and Zara and I hate being connected to these tubeies, especially now that I am feeling better and want ton runaround.
Fevers have to be clear for 48 hours before I can leave and they would like to start seeing my ANC (immune system) starting to build back up. We don't know how long we will be here, we certainly weren't expecting this hospital stay, but we just have to make the best of each day! Hoping to have some good news soon!
Happy Birthday Hazel!! A little late- you are such a blessing- so many people love you especially your Mommy , Daddy, & Raya- I wish you all good things especially health!
Dearest sweet Hazel, Happy Happy Birthday #2!!! You are in my thoughts and prayers always, even though you don't know me! xo Ellen
We pray for you everyday!! Happy Birthday precious Hazel!!❤️ So glad you can celebrate at home!
I don't know this little girl, but my friend does. And I feel their pain. Even upwardly mobile families can be destroyed by a catastrophic illness like this. Who can think about work? How do the bills get paid? Anyway, I made a small contribution.